independent

Thursday 2 October 2014

'Difference a transplant would make to my dad's life is huge'

conor william o'brien

Published 26/03/2014 | 05:44

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John and Ciara Byrne

In the build-up to the Organ Donor Awareness Campaign, which runs from next Saturday (March 29) to Saturday April 5, much attention is being brought to bear on the sensitive issue of organ availability in Ireland, given the difference a donated organ can make to a person's life and to the lives of families across Ireland.

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In the build-up to the Organ Donor Awareness Campaign, which runs from next Saturday (March 29) to Saturday April 5, much attention is being brought to bear on the sensitive issue of organ availability in Ireland, given the difference a donated organ can make to a person's life and to the lives of families across Ireland.

One such family is the Byrnes from Rathdangan. Jim 'Junior' Byrne – who runs the local Byrne's Bar – was diagnosed with a rare immune illness called Goodpastures Disease, which affects approximately one in a million people, and has since radically changed his life.

'Two years ago my dad had flu-like symptoms,' recalls his daughter Ciara, who now plays an active role in the Organ Donor Awareness Campaign. 'He'd never really been sick before. He ended up in St. Vincent's Hospital and they informed him that his kidneys were failing and he would have to start dialysis to get them working artificially. He started dialysis the following day, so it was quite a rapid process, and has been on it ever since.

'Now he travels to the Beacon Hospital three days a week for four hours of dialysis. If it weren't for that, he wouldn't be here. It's an hour and a half there and back, so it's like a full working day.'

Ciara says that the transition changed not only Jim's life but that of his whole family as they had to adjust to deal with the requirements of his illness, although she insists they were fortunate to have a treatment that can keep him alive.

'When he was diagnosed, I spent nearly every day for a month in the hospital,' she says. 'There was huge pressure, because he went [away] from managing and running the bar, so trying to juggle that and the hospital was a strain for all of us, but we were thankful he was still here and we're very lucky the dialysis keeps him alive.

'Dialysis has a profound impact on family life and the life of the individual. They're constantly tired; he would have to go to bed during the day all the time. The dialysis is great, without it he wouldn't be here.'

But despite this gratitude, she admits that an organ transplant would be the ultimate salvation, enabling her father to enjoy a far higher quality of life. Currently, however, the average wait for a kidney in Ireland is two and a half years, with other organs proving even scarcer.

'The difference a transplant would make to my dad's life would be incredible,' she insists. 'He'd be able to go out and have a meal without having to think about it; your diet is very restricted when you have renal disease – there are lots of normal foods you can't eat. He can only drink about half a litre of liquid a day, so alcohol is pretty much out of the question. He can't take holidays because his whole life revolves around dialysis. He has to take tablets every day just to keep his body functioning properly.'

Motivated by her father's plight – a situation shared by many others across the country in need of an organ donation – Ciara has since become actively involved in encouraging healthy people to consent to organ donation, given the profound impact it can have not only on someone's life but also on a strained health service which would be relieved of the costs of life-saving treatments like dialysis were more organs to be made available.

'There's currently over 600 people in Ireland waiting for heart, liver, kidney and pancreas transplants,' she explains.

'They [treatments like dialysis] are a huge cost to the health service, and if you had a transplant that cost would reduce also.

'[Jim's] story struck a lot of local people, because we're part of a really small, tight-knit community,' she says. 'We were always aware of the importance of organ donor awareness in our home. Now we take part in the annual Irish Kidney Association Fun Run and promote organ donor awareness the whole time. We have them [awareness cards] on the counter in the bar and I suppose because a lot of people knew my dad, they would have been encouraged to get an organ donor awareness card.

'With Organ Donor Awareness Week, the message would be to encourage people to carry an organ donor awareness card, and it's very easy for members of the public to get it. It would make such a difference to a huge number of people.'

To this end, she encourages people to consider the possibility of leaving their organs behind after they pass away in order to help people like her father in desperate need of a donation.

'We're trying to show the importance of carrying a card,' she concludes, 'because if you're caught up in an accident, you're not going to get the chance to discuss organ donor awareness; you need to talk about it now when you're happy and well and make the decision.'

Wicklow People

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